You tore out my colon, now you want to dump me. Please don’t leave me this way! – a plea to my gastro team

I‘m so sorry. It’s been a ridiculously long time since I wrote my last post. It’s just been so chaotic since we last spoke; with going back to work; enjoying the sunshine; attempting – and failing – to write a novel; and keeping up with my friends and family. It feels like every weekend me and Andy are maniacally busy, and every evening is spent just trying to relax enough to sleep before my next day in the office.

Going back to work on phased return is always difficult: especially in the media industry. It’s hard to just stop as the clock ticks past your allocated time in the office. I’ve always found the ‘return to work’ period hard, but this time I’m finding it an even tougher process. I’m starting to think it’s because I have so much more energy than last time. I mean I have no colon any more so most of my symptoms have now miraculously vanished, leaving me feeling relieved but wondering what new pain is in store for me around the corner.

I think I’m now going to spend the rest of my life wondering when the remainder of my digestive system is going to pack in.

On that note, I got a worrying letter from my IBD consultant the other day telling me they were going to discharge me from their care. Apparently because I have a permanent ostomy bag I no longer have Ulcerative Colitis. I almost fainted from the shock. After almost 14 years under the care of a gastro department at one hospital or another, I can’t imagine life without my specialist. The idea of it absolutely terrifies me. I think it would be unwise, especially as there has always been the underlying query about whether I have Crohn’s or Colitis, to discharge me, for me only to need their help in a few months time when things start to go to pot ( or down the drain ) again.

Imagine if they discharge me from their care and then it turns out it actually was Crohn’s, then I’d have to go through the agonising process of being referred by my GP all over again. I absolutely refuse to take my foot away from that very jammed open door. Surely I’ve earned to stay on their radar after everything I’ve been through.

I take issue with the fact I am cured of Ulcerative Colitis. Why, you ask? Shouldn’t I be throwing a party with gangs of people wearing “She’s Cured!” t-shirts and giving speeches on how grateful I am to be free from IBD. I just don’t agree with the word cure. I may no longer have the organ which caused me all those problems; I may no longer have to live in agonising pain every minute of every day; I may no longer be chained to the toilet stall – but I still have problems caused by years of disease, toxic drugs and sleepless nights. In my opinion I will have Ulcerative Colitis until the day I die. This disease has taken the best part of my life away from me; ruined relationships; holidays; career opportunities and cast a massive shadow over every little moment of the past 14 years. It has left me with riddled joints, osteoporosis at 26 and an intolerance which makes it almost impossible to eat out.

Oh, and am I forgetting something, it cost me my colon.

So, I’m sorry Gastro department I refuse to let you fob me off with a “your cured” tactic. I am healthier and happier than I’ve ever been in my life, but I still have pain; skin problems; digestive issues and agonising joints. I now have an ostomy bag and life is not always peachy: what if I need someone to help me with that? After years of being under the care of so many different teams, it makes me feel anxious to think I might soon be going it alone (which in reality I have been doing for years), with no way of knowing what is normal, and having no medical professional to call on for support.

Please don’t try to dump me on the surgical team. While they may be hot (some more than others) and incredibly attentive, they are not willing to keep me on their books unless I need future surgery – and I’m not willing to part with another major organ just to keep seeing the registrar, he’s not that hot!




The Stoma Bag Lady THE MOVIE – no really I’m serious

So I’ve created this FANTASTIC (I’m so modest) video of the story of the Stoma Bag Lady. It’s basically a trailer for my Youtube channel. I thought I would share it with you guys, I hope you like it, if you do I will do more of these kind of blatantly big headed self promotional kind of things, if not I will continue to strive to raise awareness of IBD in new an exciting ways.

Oh, and if it helps, this video does not have my annoying voice on it and is lovely and short, unlike many of my other more rambling Vlogs.

Leaving on a jet plane – first trip abroad with my ostomy

So after months of waiting and excitement tomorrow is the big day. This time tomorrow

I am sooo excited - Just one cornetto

I am sooo excited – Just one cornetto

night me and Winnie, and, of course, my boyfriend Andy, will be sitting in a fancy restaurant drinking Italian wine and shovelling down plates full of spaghetti in Venice. I am so excited I can hardly think straight.

I’ve spent the last few hours panicking that I’ve forgotten to do something. I must have checked through my ostomy kit a million times and I still think I might be missing something vital. I have my doctors note for in case they refuse to let me on the plane, why they wouldn’t let me on I don’t know, but I’ve heard all sorts of horror stories, so I’ve decided it’s better safe than sorry. Especially as I’m flying home with Ryan Air, something which I’m dreading as everyone says they are the worse airline for dealing with people with medical conditions, especially ostomy and colostomy bags.

Perhaps they think I’m going to smuggle drugs inside my ostomy bag…best of luck to them if they want to check. Think if they ask to look I will down a can of coke as quickly as possible and eat beetroot, it won’t be a pretty sight either way.

All my supplies for the journey

All my supplies for the journey

Packing for the trip has been a bit of a nightmare. I think I might have gone a bit overboard with the amount of spare bags and products I have packed for Winnie, but I am terrified that she will leak every day and I will run out thousands of miles away from my supplies and out of reach of my delivery company. I did however manage to pack them in style. I went to Primark and bought a very cheap but pretty vanity case so that all my bags, sprays and wipes are now stored together in one place. It may take up a little extra room but it makes me feel so much happier to have them in a pretty case than thrown together in a plastic Tesco carrier bag along with my laundry and toiletries.

I’ve had a few problems with my travel insurance. My company down-right refused to renew my annual insurance or offer me an alternative policy because of my hospital admissions and my operation. This was like a slap in the face. I understand how they work but it is a kick in the teeth to have to go through so much pain all your life and then have to pay so much more than others who have lived without pain for all their lives. Anyway they let me take out a single insurance policy for the trip…looks like I’m going to have to win the lottery, or marry a millionaire if i want to keep going abroad.

Of course I am panicking about the journey. I love flying, but because of my Crohns/Colitis flying has never loved me. I hate the tiny loos and the idea that a frozen block of my bloody poop might kill a random sunbather as it falls out of the sky. I despise the fasten seatbelt sign, which always seems to come on just as I start to get the warning stabbing pains associated with a massively long toilet session. the same can be said for the ascent and descent, basically the times when no one can move are the worse…for an IBD sufferer it is hell.

I’m feeling apprehensive about the flight. I’m concerned about what I can and can’t take on with me. Luckily Charter UK (my delivery company) have provided me with a travel card which says – in multiple languages – that I have a medical condition and an ostomy bag and need to carry medical equipment. I have a feeling that this card might just save my life in these kinds of situations. My doctor has signed it and I have stored my sprays and water dispensers in a clear plastic bag along with my lip gloss..but just in case they are confiscated I’ve got a spare stash in my luggage.

Happy after a run in prep for our Italian holiday

Happy after a run in prep for our Italian holiday

It’s almost time to go. I’ve spent the last hour looking up restaurants in Venice, Florence and Rome (our three amazing destinations) which accommodate lactose intolerant diners. I can’t wait to tuck into some vegan ice cream in Rome…and scoff plates of spaghetti Bolognese. But more than that I can’t wait to do my first international stoma bag lady challenge – ride a gondola in Venice. It is meant to be very expensive, but I have always wanted to do it so it’s going to be really magical.

Me and Andy deserve a holiday. After everything that’s happened with my health, and the massively bumpy ride we’ve been on over the past year or so with my Colitis and my ileostomy operation, and even the stress of moving in the last few weeks, kicking back in Italy will be just what we need.

I couldn’t hope for a better boyfriend and I can’t wait to take him to the Ferrari museum to go on the F1 simulator. I also can’t wait to experience the romance of Italy and share it with Andy.

We are away for nine days in total. I will try to blog, share pics, tips and experiences when I can, but if you don’t hear from me just know that I will be having a heck of a good time.

Going abroad with my ostomy is a massive leap in the dark. It is, in itself, a massive challenge. We will be flying, getting on trains, eating foreign foods and attempting to communicate my condition and allergies in a foreign language and environment.

Yes I’m nervous…but am I excited?

Hell yeh!!



Climbing 275 steps – one giant leap on my road to recovery

I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid £15 each to get into the Minster and climb the tower. I know £15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.



After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!



The great ‘stoma’ escape & the never ending leak

This morning Winnie (my temperamental stoma) decided she’d had enough of being

My new padding for ileostomy scar lasted the whole of five hours before falling off

My new padding for ileostomy scar lasted the whole of five hours before falling off

covered up and trapped in her bag and decided to make a break for freedom. At the time I was happily soaping up in the shower, desperately trying to avoid the red raw skin which surrounds my ileostomy op scar and mucus fistula bag, but none the less enjoying the refreshing feeling of washing off the night’s grime in a nice warm shower.In my slightly hungover haze (a few glasses of wine at Andy’s neighbour’s) I was blissfully unaware  that as the hot water poured down over my ostomy bag the flange (horrid word) was gradually breaking away from my skin.

Suddenly all I felt was this heavy feeling and then the bag starting to peel away from my skin. Water poured onto my stoma, who out of fright of the weight, warmth and speed of the water, started to shrink inwards in the fashion of a startled turtle popping its head back into its shell, while I scrambled to hold onto the ostomy bag which was rapidly filling with water and becoming heavier and more water-logged with every passing second.

It was the most stressful shower I have ever experienced. Ok, that’s if you don’t count the handful of showers (if you can call them that) I was subjected to in the days following my ileostomy operation, where I was dragged to the assisted bathroom by a poor and unsuspecting student nurse before being pretty much physically forced to strip down to my birthday suit, before being popped on a plastic garden chair and hosed down at arm’s length. This would be the first time someone other than my nurse or surgeon saw my ostomy bag. To say I felt humiliated as the rather young and pretty nurse soaped my back and gave me shower gel for my ‘intimate’ parts while she prattled on about reality tv and student housing in an attempt to put both me and her at ease would be a severe understatement…I think the word traumatised is more fitting. 

Red raw skin halfway through dressing emergency after leak

Red raw skin halfway through dressing emergency after leak

I don’t think I will forget the poor shaking nurse who was made to take on this task on her face day on-the-job. As she helped me remove my hospital gown (that I was still in even though it was days after the operation) and revealed my bony skeleton, which was scarred like a drug addict from the amount of nurses and doctors who had taken my exhausted state as an opportunity to use me as a human pin cushion, I saw her face actually freeze into a transfixed look of horror and disgust. I was actually appalled for her, it was like I’d witnessed the moment that she realised she would have to do this to other people (both older, wrinklier, and with various scars and bits of machinery and stomas hanging out of them) for the rest of her life, and she’d just realised that this wasn’t what she’d signed up for. But her fleeting revulsion aside, she handled the situation miraculously well and she managed to do a really good job in the end washing away days of blood, dirt and god knows what else…and surprisingly she quickly became my favourite nurse and I like to think I became her favourite patient, as we shared stories of student days and nights out in Chester.  

I have to admit that I had a feeling Winnie was going to try to make a bid for freedom today. To date she has had several failed escape attempts, which have been foiled at the last second by myself, who acting like a watchful prison guard has spotted every attempt Winnie has made to scale her prison cell at the very last second almost by chance as my inner warning alarm has triggered and I have checked on my bag just as the adhesive has started to break free. This hasn’t meant that she hasn’t enjoyed a few leaks. In fact over the past couple of days there have been more leaks than I have cared to keep count of. So far I have mostly been lucky and these have happened in the safety of my own home where I have enjoyed the liberty of having my changes and supplies as well as my own clean bathroom to plug the cheeky rascal before things have got out of hand. I like to think that I’m handling it well but to tell you the truth I’m living in constant fear of my first public leak and for that reason I am avoiding white clothing or (I know this is going a bit too far) standing on white carpets for fear of a poo related incident. 

Having a lovely time out with boyfriend unaware of impending leak

Having a lovely time out with boyfriend unaware of impending leak

The reason for these leaks, which seem to come at least twice a day, appears to be that the flange puckers every single time I try to sit down, crouch, cross my legs. You see my skin is now so raw – as my picky body has an allergic reaction to each and every ostomy product going – it looks like I have set fire to it and let it burn off (my stoma nurse says I look like a burn victim) and the bags are simply refusing to stick to the shiny surface. I’ve tried different makes of bags; bags infused with honey, seaweed; bags which are like sink plungers sucking on your skin; small bags; big bags, but nothing will stay on for more than a few hours, or will stay only if I use meters of tape in an attempt to secure the gaps, but either way the poo will gradually make its way through anything I try to put in its way. And if it’s not the bag it’s the wound dressing leaking, or the fistula bag exploding as it fills up with water in the shower. 

To tell you the truth I’m sick of it all. My skin is so itchy from leaks and allergic reactions I must look like a withdrawing crack addict as I lie in bed holding my hands inches from my chest willing myself not to itch. I feel like taping oven mitts to my hands to stop myself having a cheeky scratch, as I know if I start I won’t stop until I’ve scratched away my whole stomach and look like something from Alien. In fact when the nurse was wrapping my wound up in swathes of bandages, leaving me looking like Michelin Man, she commented on the way my feet twitched uncontrollably as my body fought the overwhelming instinct to scratch scratch scratch. 

So if any of you out there have any advice at all please please please comment below. I really need help before I give into the devil sitting on my shoulder who is constantly waving his pitch fork and whispering “come on…itch it…go on, you know you want to!” HELP!!!